Caring for a loved one with dementia can be, at times, stressful. From being a fully independent person, a husband, a wife, or a mother or father, to gradually having to help the relative more and more in everyday life, can be both frustrating and impact on well-being. Dementia entails many symptoms that can have an impact on the family carer, ranging from behavioural changes such as wandering or aggression to memory problems and problems in everyday life (Kim et al 2011). Not only do they have an impact on the carer, but they can also affect the well-being of the person with dementia (Giebel et al 2015).
Dementia is associated with high costs, but not all of these costs refer to paid services. In fact, some 40 percent of care costs of people with dementia are supported by informal care provided by family members (Schneider et al 2003). It’s no surprise then that carers can sometimes feel exhausted and overwhelmed by caring for their loved one with dementia.
Also, with much negative media coverage and reports on care homes (Older People’s Commissioner for Wales 2014), carers understandably want to care for their relative at home for as long as possible, which then involves higher and more intense levels of support, and thus likely higher levels of carer stress.
To help carers deal better with their new caring role, targeted interventions are being developed. Understanding which support services and forms of interventions help carers the best is receiving more and more interest, such as in currently funded National Institute of Health Research programmes (University of Manchester 2014).
The study evaluated here describes the outcomes of a trial providing information and management techniques to family carers.
Methods
This study is a clinical randomised controlled trial, in which participants were randomly allocated into either the intervention group (N=173) or to the treatment as usual group (N=87) by a computer generated allocation system.
The intervention programme, START, was mostly administered in the carers’ homes by trained psychology graduates. This included psycho-education about dementia and emotional support services, as well as challenging behaviour management techniques, assertive communication and relaxation. The intervention was carried out over eight weekly sessions, whilst carers practiced the learned techniques in between and afterwards at home.
To evaluate the effectiveness of the intervention, the researchers measured anxiety, depression, carer burden and health status of the carer, whilst the neuropsychiatric behaviour, quality of life and the overall level of impairment of the relative with dementia were also assessed. Follow-up data on the effectiveness of the intervention was measured at four and eight months.
Results
The trial proved effective and reduced carers’ levels of anxiety and depression, whilst also improving their quality of life.
Interestingly, carers also reported fewer instances of abusive behaviour towards the person with dementia as opposed to those carers in the treatment-as-usual group, but this was not a significant finding. For people with dementia, the intervention had no effect on their well-being.
Strengths and limitations
This study has many strengths. The fact that participants were randomly allocated to either the intervention or treatment as usual group; that outcome assessors were ‘blinded’ (did not know) about the group allocation; a good sample size was recruited and validated outcome measures were employed all show the strength of this trial, and make it easy to replicate.
One possible limitation of the trial, which is however the case for many published trials, is its restriction to those people who have English as a first language. In a recent report of the All-Party Parliamentary Group on Dementia (Alzheimer’s Society 2013) the issue of dementia services and their reduced accessibility to people from ethnic minority groups is raised. If we want to apply this within research also, more trials and intervention studies need to allow the opportunity for people whose first language is not English to participate.
Summary
Overall, the trial reported was effective in reducing carer’s anxiety and depression levels, whilst simulatenously improving their quality of life. This suggests that the START manual could be employed in practice.
One important avenue which needs to be explored further is translating the manual into different languages, such as Urdu or Gujarati to accommodate the growing South Asian population in the UK (and in other countries). In fact, this aspect of greater ethnic minority inclusion should be employed on a larger scale within research. This would ultimately improve the access to dementia services by ethnic minority groups, something which has many barriers (Giebel et al 2014).
Link
References
Kim H, Chang M, Rose K & Kim S (2011) Predictors of caregiver burden in caregivers of individuals with dementia Journal of Advanced Nursing 68 (4), 846–855 [Full Text]
Giebel, C.M., Sutcliffe, C., & Challis, D. (2015). Activities of daily living and quality of life across different stages of dementia: a UK study. Aging & Mental Health, 19 (1), 63-71. [Abstract]
Schneider, J., Hallam, A., Kamrul Islam, M., Murray, J., Foley, B., Atkins, L., Banerjee, S., & Mann, A. (2003). Formal and informal care for people with dementia: variations in costs over time. Ageing & Society, 23, 303-326. [Abstract]
Older People’s Commissioner for Wales (2014) Care Home Review Cardiff: Older People’s Commissioner for Wales [Full Report]
University of Manchester (2014) Effective Home Support in Dementia Care: Components, Impacts and Costs of Tertiary Prevention Manchester: University of Manchester [Abstract]
Alzheimer’s Society (2013) 2013 Inquiry of the All Party Parliamentary Group on Dementia London: Alzheimer’s Society [Full Report]
(7) Giebel, C.M., Zubair, M., et al. (2014). South Asian older adults with memory impairment: improving assessment and access to dementia care. International Journal of Geriatric Psychiatry [Abstract]
Excited to see my 2nd @SocialCareElf blog on #dementia #carers http://t.co/CmHy8sIQZP @legalaware @clairesurrbdg @ken_kenc @clarkmike
Check out my 2nd @SocialCareElf blog on #dementia #Carers http://t.co/CmHy8sIQZP #demphd @DrHubaEvaluator @JeanGeorgesAE @hotpotinajiffy
Rt @SocialCareElf ‘Strategies for Relatives’: improving #mentalhealth for family #carers of people with #dementia http://t.co/JDp9shcwCw
Latest @SocialCareElf by @ClarissaGiebel looks at intervention for carers of people with dementia: http://t.co/Ye2sryIXfl
@Aspirantdiva @SocialCareElf Thanks for the mention Jo :) and a merry Christmas!
Great blog on The Social Care Elf to end the year – “Strategies for Relatives”: improving mental health for… http://t.co/IWu8sFE5xh
Our final blog of 2014: Psychological support for #carers of people with #dementia – does it work? http://t.co/t4LA7tLaMV @ClarissaGiebel
Our latest blog http://t.co/t4LA7tLaMV prompted @SophieSW14 to get in touch to share her experiences as a #carer: http://t.co/jp2JW3ewgA :)
Tx Social Care Elf ‘Strategies for Relatives’ improving carers of people with dementia mental health http://t.co/GFjokqt7b3 via @sharethis
We must do all we can to help those people with Dementia and their carers who need all the support we an muster.
Hi Clarissa,
Thanks very much for your blog and for raising the profile of this RCT. There are relatively few randomised controlled trials relevant to social care, so it’s always good to flag up the decent ones.
I have a comment about one of your limitations. You say: “One possible limitation of the trial, which is however the case for many published trials, is its restriction to those people who have English as a first language”.
I’ve read the paper and can’t find this restriction mentioned anywhere.
They recruited trial participants through a mixture of urban, suburban and rural settings, and described how the “therapy was carried out with an interpreter if the carer did not speak English fluently”.
They themselves highlight that they “found it difficult to deliver the therapy to people who did not speak English” and go on to say that only 4 of the 260 carers included in the study struggled with spoken English (3 in the intervention group).
So my reading of this is that the trial was not restricted to people who spoke English as a first language, but that the researchers did not do enough to recruit a representative sample with plenty of non-English speaking carers.
I guess there are quite significant cost implications for broadening the trial in this way (e.g. translating the manual and delivering the therapy with translators).
As you say, it’s extremely important that this is done if this intervention is to be broadly offered on the NHS.
Cheers,
André
Hi Andre
Thanks for your comment! I must have slightly misphrased this. What I meant was that the trial at large did not include many people without English language proficiency, considering the large proportion of ethnic minorities, and some older adults from an ethnic minority background who have not learned English as well as their grandchildren growing up in the UK.
Indeed, the authors did include four participants without English language proficiency in the trial, which is at least a start. What I was rather referring to was the fact that manuals (or questionnaires) were not translated into different languages. Understandably, there are many languages it could/should be translated into.
But, it is important that the authors found the intervention to be mostly effective, This justifies, as the authors also state in their Limitations section, to now translate the manual into different languages to allow greater access for dementia carers to participate.
Hope I made it clearer now? :)
Clarissa
Thanks Clarissa – that does make sense now :-)
I helped run a CASP workshop yesterday and we used this START RCT paper for a critical appraisal exercise with a number of social care professionals and researchers.
Everyone enjoyed reading the paper and felt that it was a nicely conducted study that was very well presented. However, we did have a few concerns about it:
– You said “The trial proved effective and reduced carers’ levels of anxiety and depression”, but it was only reduced by -1.80 points (CI -3.29 to -0.31; p=0.02). The power calculation they report in the trial (page 4) was a decrease of at least 2 points, so the reduction in anxiety and depression may have been statistically significant, but it was not clinically significant.
– The number of outcomes they measured seemed very large. It made reading the results quite a task! It was mentioned by one of our facilitators (Sally Crowe) that Cochrane are now recommending no more than 7 outcomes are measured by an individual piece of research. A good plan in our book :-)
– The ‘abuse’ outcome confused us. We couldn’t understand how, if abuse was occurring, it was allowed to continue. Or are we misunderstanding something there?
– We were flummoxed by the allocation ratio of 2:1 (intervention: TAU). The authors said this was to “allow for potential clustering effects in the intervention arm” (page 3). Do you have any idea what they mean?
– We wanted to know whether or not the two groups were treated equally apart from the intervention. Presumably the TAU group received the usual support group care (both for carers and service users). We wondered if this was also available to the intervention group during the trial (if it wasn’t this could have biased the results), but we couldn’t find this information anywhere.
– Finally, we really wanted to see the economic analysis of this START programme. The intervention shows some benefits, but as they are not clinically significant, we felt that the cost of the treatment would be key. It looks like the authors will be publishing this data in a separate paper, along with the follow-up data of the clinical outcomes. It’s amazing how many publications you can get from one piece of research eh!?
Cheers,
André